When someone is diagnosed with Alzheimer’s disease or dementia, his or her behavior will change, seemingly without reason or explanation. Nataly Rubinstein explains ten common behaviors that baffle and frustrate caregivers—and shares a wealth of practical advice on how to handle them.
No doubt about it: when someone you love is diagnosed with Alzheimer’s disease or some other cause of dementia, it’s a crushing blow. Not only must you face the fact that your loved one has a degenerative (and ultimately fatal) condition, you also have to deal with a plethora of increasingly strange behaviors. Mother tells the same story fifty times a day and wanders the house all night. Or Dad compulsively loads and then unloads the dishwasher. Or your devoted spouse of thirty years is suddenly convinced you’re cheating on him with the next-door neighbor.
If you feel confused, worried, frustrated, or even angry about the bewildering behaviors exhibited by your family member, congratulations. You’re normal. And now, says Nataly Rubinstein, it’s time to come to terms with a hard truth: the real source of your negative reaction is not necessarily the patient. It’s you.
“One big reason these behaviors are ‘unwanted’ is because they disrupt your life,” points out Rubinstein, author of the new book Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, 2011, ISBN: 978-1-9361981-3-9, $17.95, www.AlzheimersCareConsultants.com). “Sure, many behaviors are unhealthy and dangerous for you and your loved one. Other times, though, it’s not the actual behavior that’s causing so much trouble—it’s our reaction to that behavior, based on the mindset we’ve locked ourselves into.”
In short, she says, we believe that the way we think things should be is the only way (or at least the only right way). Thus, we limit our own options when it comes to dealing with the patient. What’s more, we don’t want our relationship with the person to change—and these behaviors are 24/7 evidence that it has changed…dramatically and forever.
Rubinstein speaks from firsthand knowledge. As a licensed clinical social worker and geriatric care manager, she has over twenty-six years of professional and personal experience. (Visit www.AlzheimersCareConsultants.com for more.) Besides her professional work in dementia care, she served as a primary caregiver for sixteen years after her own mother was diagnosed with dementia.
“Being a caregiver for someone with any form of dementia, whether you live with the patient or not, will change your life,” Rubinstein asserts. “And sometimes, the new normal is more a problem for you than for the patient. For instance, you—not your loved one—are the person who tends to get upset when the same question is asked over and over again. I’m not saying it’s easy, but the best thing to do is get into the patient’s world and provide the answer over and over again.”
While every case of Alzheimer’s disease and dementia is different, Rubinstein says there are practical ways for caregivers to successfully deal with the behavioral changes that result from a patient’s memory loss. Read on to learn about ten “problem” behaviors that caregivers often have to deal with—and how you can best respond to these changes if they crop up in your relationship with your loved one:
PROBLEM: Compulsive Behaviors (Dad keeps taking everything out of his wallet and putting it back in.) Your loved one with Alzheimer’s may constantly check to see if the door is locked, empty or rearrange wallets or purses, pack and repack clothing, etc. These things are all manifestations of anxiety. The patient knows he has something important to remember but has forgotten what it was…and this causes his repetitive behaviors. The “big four in anxiety” are the basics for all of us: food, shelter, clothing, and family, and it’s not surprising that many compulsive behaviors revolve around these issues. (A man’s wallet signals to him that he is still a provider, for instance, so he may seem obsessed with going through its contents.)
SOLUTIONS: First, ignore the behavior and remember that although it seems strange to you, it’s probably not doing any real harm. Giving cease-and-desist advice to your loved one will only spark stress and arguments. Plus, if a behavior isn’t reinforced, it may stop. In general, do all you can to help the patient cope with his anxiety. Speak in a calm, gentle voice, and don’t be afraid to touch or hug. Remember, the person is seeking reassurance. Your job is to show him that he is safe, loved, and respected.
PROBLEM: Repeating (My wife asks me the same question over and over again, even though I answered it—yet again—not five minutes ago.) At their cores, Alzheimer’s and dementia are diseases of forgetting. As these illnesses progress, patients live increasingly “in the moment,” and they lose the ability to think and process information. For someone in this situation, repetition—whether it’s asking a question, stating a fact, or telling a story—is comforting.
SOLUTIONS: It will take patience on your part, but it’s usually best for everyone if you answer the same question or listen to the same story again and again. Handling repetitiveness in this manner doesn’t hurt you, it helps your loved one, and it can prevent much more serious episodes of agitation, confusion, or aggression. Also, when dealing with an Alzheimer’s or dementia patient, it’s always best to keep your conversation as simple and direct as possible in order to avoid miscommunications that might spark confusion and repetitive questions.
PROBLEM: Toileting Problems (Dad has started peeing on the couch, in the bathtub, and even out in the yard!) It’s common for Alzheimer’s patients to struggle with incontinence. Sometimes they simply don’t realize they need to use the bathroom or can’t make it there in time. And other times, they may have forgotten the location of the bathroom or what its purpose is. Nobody has accidents on purpose, and patients will often offer alternative explanations as to why, for instance, the bed or couch is wet—such as spilled drinks or leaky roofs.
SOLUTIONS: Right off the bat, realize that it’s okay to feel extremely reluctant to take on this particular cleaning task. When an adult can no longer control his bladder or bowels, it’s natural for caregivers to feel distressed. If you’re experiencing toileting problems, the first step is to make a doctor’s appointment to ensure that another medical condition or medication isn’t the cause. Establish a regular bathroom routine and encourage the patient to go instead of asking whether or not he needs to.
You may also find it helpful to place signs indicating where the bathroom is, make the toilet seat a different color, provide clothes without complicated zippers or buttons, or buy pads for beds, furniture, and cars. Ultimately, don’t beat yourself up if you feel too overwhelmed by toileting problems. It might be better for all involved to call in outside help rather than force yourself to face changing a parent’s diaper.
PROBLEM: Refusal to Bathe (Mom insists that she took a shower this morning, but I know she hasn’t bathed in several days.) An Alzheimer’s or dementia patient who once paid scrupulous attention to her grooming and beauty rituals may gradually begin to “let herself go.” In the beginning, you may not notice small changes, but it’s impossible to ignore when someone to whom you’re close wears the same clothes for days at a time or hasn’t cleaned herself in awhile. Some patients actually believe that they have bathed recently; others may have forgotten the steps it takes to clean oneself, think that there’s no need to bathe if they haven’t perspired, be afraid of water or showers, or not want to ruin a hairdo. No matter the reason (even if it is somewhat logical), refusal to bathe is a major issue for those who live in close proximity with the patient.
SOLUTIONS: Know that forcing someone to bathe when she doesn’t want to isn’t an easy or one-size-fits-all task—and also acknowledge that you aren’t being unreasonable in insisting that this happen. Your own physical and emotional well-being are in play here, too. If appropriate, try to reason with your loved one by telling her that you’ll have visitors or must go to a doctor’s appointment and that you know she’ll want to look her best. Also, you can make showering easier by pre-measuring shampoo, setting water and room temperatures to the patient’s desired level, playing music, etc. Above all, keep in mind that a person with memory problems needs to feel safe and secure, so do everything possible to prevent her from feeling threatened or humiliated in this intimate setting.
PROBLEM: Wandering (My husband walked out the door and was halfway down the street before I noticed!) When people wander—whether they’re experiencing memory loss or not—it’s usually because they’re looking for a safe or comfortable place. Your loved one might be seeking a bathroom, a person or place from his past, or relief from boredom or pain. (Or he may have simply become confused while getting the mail.) When they’re seeking something in particular, Alzheimer’s and dementia patients can be very adept at slipping away—even if they’re wheelchair bound!
SOLUTIONS: Wandering is a behavior change that is imperative to address, because becoming lost or being unaware of surroundings can have dire consequences for those suffering from memory loss. Whether your loved one has a history of wandering or not, buy him a Safe Return necklace or bracelet through the Alzheimer’s Association. You might also change locks, install a security system in the patient’s home, or make use of baby gates. Again, making your loved one feel secure is paramount, so don’t call attention to any changes you may make in the living environment. And pay special attention to making sure that he doesn’t wander away during outings.
PROBLEM: Paranoia (My mother thinks that I’m trying to poison her.) Paranoia boils down to fear. And people who are suffering from memory loss have a lot to be afraid of. As time goes on, Alzheimer’s patients lose the ability to recognize their homes, their friends, their family, and even their own reflections in the mirror. In the midst of this unfamiliarity, they’ll struggle to make some sense of their situations, and they can hold on to the ideas they form for quite some time. Even though your loved one’s belief that you’re trying to steal her jewelry may seem irrational to you, it’s nothing short of reality to her. (In this situation, you may have asked to borrow a certain necklace years ago. Mom can’t find it now, so—clearly—you must have taken it!)
SOLUTIONS: Dealing with paranoia is tricky. The best things you can do are to remember that your loved one isn’t trying to hurt you, and to try not to take things personally. Know beforehand that rational explanations and clarifications probably won’t work, so don’t pin your hopes of returning to “normal” on them. And while there may be nothing you can do to help the patient return to reality, it’s always a good idea to schedule medical appointments to check for other illnesses, sensory deficits, or side effects from medications.
PROBLEM: Hallucinations (My father keeps talking to someone who isn’t there.) Hallucinations are closely related to paranoia. A hallucination is a misperception of reality, often sparked by changes in the brain that cause the patient to see, hear, feel, or smell something that no one else does. Rubinstein recalls a client, Max, who loved his cat, Morris. Max enjoyed playing with Morris, grooming him, and watching TV with him. The only problem was, Morris didn’t exist…and Max’s hallucination was driving his wife, Alice, over the edge!
SOLUTIONS: In the case of Max and Morris, Rubinstein advised Alice to change her attitude about the imaginary cat. Instead of letting Morris upset her, Alice realized that the cat wasn’t hurting anyone and was making Max happy—plus, he was the perfect pet since he didn’t shed, make noise, or make a mess. Like Alice, if your loved one’s hallucinations aren’t doing any harm, do your best to live with them and not allow them to become a bone of contention. Keep in mind, too, that changes in environment or medication can trigger hallucinations. If your loved one is hallucinating (or experiencing paranoia, for that matter), warn visitors in advance so that they don’t inadvertently exacerbate the situation.
PROBLEM: Sundowning (My wife gets agitated and starts trying to find her own mother every day in the late afternoon.) Many Alzheimer’s and dementia patients perceive their environments differently as the light begins to fade toward sundown—and this sensory confusion can cause them to become anxious, paranoid, or aggressive. Understandably, sundowning is frightening for the person whose world seems to be becoming more menacing by the minute. In her eyes, the light pole outside the living room might become a threatening intruder, and she will begin to look for a safe place.
SOLUTIONS: First, realize that once sundowning begins, the most you can do is provide a secure place for the patient and tell yourself that tomorrow is another day. As is the case with paranoia, there’s very little you can do to convince your loved one that the reality she’s experiencing isn’t accurate once she has worked herself into an agitated state. However, you can take steps to decrease or avert sundowning’s effects. Stick closely to a daily routine, and start turning on lights mid-afternoon. You can also encourage your loved one to be as active as possible during the day (and thus tired toward evening) and to sit in the sunlight for at least 20 minutes to reset circadian rhythms.
PROBLEM: Aggression and Violence (My once-loving husband is increasingly nasty to me when I talk to him and try to help him complete tasks.) For individuals suffering from a form of memory loss, many actions, requests, and events can trigger a volcanic moment (one that you probably didn’t see coming). Since Alzheimer’s and dementia cause the brain’s pathways to work differently, communication doesn’t “work” the way it used to. Things that seem normal to the caregiver (like getting out of bed after a nap, needing to bathe, or eating a meal) may seem threatening to the patient, thus sparking belligerence, arguments, or even combativeness. Plus, since politeness is a learned behavior, it (along with other social mechanisms) can be stripped away by memory loss.
SOLUTIONS: As with paranoia, try not to take aggression personally. People suffering from dementia are often frightened and in survival mode, and they lack other outlets for relieving stress. Of course, it’s always a good idea to consult a doctor and check to make sure that the correct medications are being taken. However, an educated caregiver is often the best medicine of all for patients who are aggressive. Your behavior can either fuel the fire or help extinguish the flames. It’s important to remain calm and reassuring, and to approach reality as your loved one sees it. (In other words, trying to reason probably won’t have a positive effect.) If you feel that you’re in danger or can’t handle the situation, though, leave the room, get to a phone, and call for support.
PROBLEM: Sleep Problems (Mom wakes up frequently at night, and as a result we’re both tired and cranky all day.) As we age—whether we’re suffering from Alzheimer’s or not—the quality of our sleep tends to change. Individuals can wake up frequently due to the need to go to the bathroom, pain, anxiety, restless leg syndrome, or even a confusing environment. And when you’re a caregiver, your loved one’s sleep problems become your sleep problems. Obviously, consistent sleep deprivation won’t help either of you to function or cope well. On the other hand, it’s also possible for patients to sleep too much.
SOLUTIONS: First, make sure that your loved one is physically comfortable in terms of her clothing, temperature, lighting, mattress, pillows, etc. Helping her to be mentally comfortable so that she can rest well might be a bit trickier. Try to minimize stress around the clock, stick to a routine, and provide reassurance rather than giving orders. For instance, you might tell your mom that you know everyone in the house is safe at night because she’s so careful about checking the doors instead of suggesting she go to bed because she’s already checked the locks twelve times. If your loved one sleeps too much, limit daytime naps and try to get outside so that the sun can influence circadian rhythms. If your initial efforts don’t work well enough, consider hiring a nighttime aide to give yourself a break.
“Ultimately, while you can’t change the progression of the disease from which your loved one is suffering—or even greatly influence his or her behaviors—you can take steps to minimize the stress both of you feel as a result of behavior changes,” says Rubinstein. “Remember that educating yourself is one of the smartest things you can do—and never be afraid to ask for help and support if you feel that you’re having trouble handling things yourself.
“Also, keep in mind that while many of the behaviors that result from memory loss can be difficult to deal with, it doesn’t mean all the joy is gone from your life and that of the patient,” she adds. “Caring for my mother wasn’t always easy or enjoyable, but I can assure you that we did share plenty of smiles, laughs, and yes, love. You, too, can have a positive impact on the patient’s quality of life—and you can definitely still enjoy special moments with your loved one.”
About the Author:
Nataly Rubinstein is a licensed clinical social worker and a certified geriatric care manager specializing in Alzheimer’s disease and other dementias. For sixteen years, she was the primary caregiver for her mother, who was diagnosed with dementia. Nataly also worked for several years at the Wien Center at Mount Sinai Medical Center in Miami Beach, Florida, which is ranked among the nation’s top hospitals for geriatric care by U.S. News & World Report. She is a consultant for numerous assisted living facilities and offers staff training and education on dementia. Nataly runs a private practice and provides counseling, educational programs, and support groups for people with dementia and their caregivers. She is currently working on her PhD.
About the Book:
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, 2011, ISBN: 978-1-9361981-3-9, $17.95, www.AlzheimersCareConsultants.